September – December 2009 – The Calm Before The Storm

There was slow disease progression during this period – but there were quite a lot of contacts made and arrangements put in place that would make things easier going forward:

Carol had to stop driving. Although she could still walk around with a stick the continued locking of her knee and weakness in the foot meant that driving was becoming too painful. It was also getting dangerous as Carol’s legs weren’t responding the way they should. So the old silver KA had to go – by the way the car was called Fifi.

Carol had been prescribed Riluzole as the latest MND drug treatment – we knew it wasn’t any kind of “cure” but it could apparently slow down the progression of the disease – some notes stated a delay in the onset of around 3 months. Carol did actually take this for the first 3 months but the side effects (blurred vision / nausea etc) eventually became too much so she decided to stop.

Carol began researching “other” ideas and made drastic changes to her diet. MSG - we’ve got to get rid of MSG it’s bad for you, so out goes Chinese food and plenty more besides! Gluten also has to go so Carol moved onto gluten free foods – can they please do something about the taste of these! Then there were the vitamins and supplements – here’s a list of the pills Carol started to take - B12, B3, B1, B6, Coenzyme Q10, Phosphatidyl Choline, Turmeric Extract, Magnesium, Vitamins B / C / E, Lipoic Acid, Omega 3, Pyruvate, Ginkgo, Antistax Healthy Leg Capsules, Activated Quercetin. We even bought “Brain Repair Formula” from the States - one of those fabulous guaranteed to work wonder drugs!

That’s the problem with the internet – too much information so what do you believe and where do you stop? At the time none of that mattered if it meant Carol felt better for longer so we’d get whatever she wanted to try. The point is all of those things may actually have worked and helped delay the progression – and they may not – we don’t have the benefit of any comparison so I’m sticking with the positive. They certainly improved Carol’s state of mind – and that’s good enough.

There’s also something called Magnotherapy – but I’ll talk about that in a later post.

Now what about claiming benefits as Carol could no longer work? DLA was easy and Carol was moved up to the higher level for both care and mobility almost immediately. ESA was a different matter altogether – that’s the replacement for IB for people with health problems. Carol made the claim and was refused – the system is so supportive for those of us who’ve always worked and never claimed before! Despite Carol working since leaving school at 16 the fact that she’d been studying for the last 3 years meant she’d not paid enough contributions during that period so she qualified for nothing off the state – thank you very much for that! I’ve done all my ranting about this long ago so we’ll just leave it there.    

Lou had discussed a research study being carried out at Derriford – Carol was initially interested but once she found out it was a placebo trial she decided not to participate. I think it was the thought of nothing coming from all the effort that put Carol off – there was enough to cope with at that point and Carol didn’t need the added stress.

Dysarthria was the term used for the speech / swallowing problems. We met with the Speech Therapist 3 times during this period and the letters make interesting reading today. Carol could still speak, and was certainly still understood by the family. Carol was still drinking and eating reasonably well although problems with swallowing were beginning to appear and certain foods were worse than others. The letters do state there was deterioration between visits 1 and 2 and there are ideas on how Carol could deal with the changes – hints and tips on swallowing / exercises / foods to avoid. I still remember the third visit as Carol asked to be discharged!! Carol has always been stubborn – she didn’t take to the new therapist who’d visited and that was that! However we would need her to come back in the New Year as the deterioration gathered pace and she would provide some great help going forward.   

The Occupational Therapist reviewed the house and talked to us about the future. Our bedroom was upstairs, so is the bathroom, and that was an issue that would need to be dealt with as Carol progressed and would lose the ability to walk. That was a scary thought all that time ago – Carol seemed to be ok so it was difficult to see her not being able to get up the stairs at all – but that would happen within the next 6 months. The OT also made the first of the many equipment requests, bringing in a walking frame and a wheeled walker with a seat. Carol was regularly using these as we approached the end of December.

Way back in June I'd taken Carol to London to see Mamma Mia (as well as Bruce in Hyde Park!). I’d been going to London every month that year for work and had seen a few more shows to pass some of my evenings there. We’d spoken about going a few times after that first trip but not got round to it – the New Year would change all that and there would be many more as we moved into a frantic few months - lots of trips to London and family visits plus a couple of holidays and loads of money being spent – and why not!!

July / August 2009 - Starting To Cope & Getting Things Organised

Looking back at my scribbled notes, doctor’s letters and various other bits of paper I see that my memory isn’t perfect. I was sure Carol’s voice was lost before the notes say it was – I had different dates in mind for Carol’s walking aid support needs changing – what I find is that we were into early 2010 before the major changes occurred, but that shortens the period in which everything seemed to happen from the 13 months I’d pictured to more likely 10 months in reality. As I said before – progression was rapid. It also reminds me that the first 6 months or so were relatively quiet.      

Following the diagnosis things start to happen – referrals to different areas of support. The specialist wanted us to go back and see him before the end of the month but Carol cancelled – and we’ve never been back to see him since. Carol needed a person to blame and the specialist got that honour – I suppose somebody had to.

What I can also say now is that a grieving process begins almost immediately – you start to grieve for the loss of the life you’ll no longer have, and the loss of the person you’ve planned everything with. Carol hadn’t gone anywhere but all of the plans for her life had – and so had mine. In truth those 5 wonderful stages had already begun with denial – a pretty obvious one we’d been in for quite a while – the others would follow over the next few months (anger – bargaining – depression – acceptance) in various guises and at various times that would be different for all of us.

The first person we met with was Lou from MNDA. The denial stage was still very much evident and Carol was unsure about the meeting but warmed into it once Lou started to talk to us. Lou was frank and open about what lay ahead for Carol and what we could expect. She started us working on the list of things we were going to need as time went on. She talked us through how the disease progressed from her experience, but guarded against any assumption that Carol would be the same as anyone else. That’s when I realised just how unique MND is - no two people are ever the same so although we could predict what to expect there were no guarantees and certainly no timescales. Counselling was offered but that’s not something either of us wanted to go for – and it still doesn’t appeal.

The most important thing for me was that it became apparent that staying in front of the disease was vital as the progress was unpredictable. We’d need everything organised ahead of any changes in Carol’s condition. That was quite daunting at that point, as all we had were words and Carol did seem to be ok. Lou talked to us about speech therapy, physiotherapy, equipment, care packages and end of life decisions.  Carol was able to explain how she felt and we both felt better for the chat, but the road ahead suddenly looked a lot more bleak.

Talking things through properly with the children was the next key event, and I did that. I was honest about the disease and what Carol, and us as a family were now facing. That wasn’t easy but honesty was the best approach – I suppose them being older was a help as they could understand what I was saying even though I was giving them devastating news about their mum. I have no idea how you can cope with something like this if your children are very young.

A trip up to the family in Altrincham meant we could complete a 5 mile charity walk in August in memory of Jake. Carol did the whole thing slowly pushing Charlie’s buggy in front of her – with a wheelchair following behind just in case - it was just like one of them Top Gear forfeits waiting to pounce! This was also the first time since the diagnosis where the whole family was together – as you would expect there were quite a few tears all round.

Later in August we attended the second of the soon to be regular meetings – this one was with the Rehabilitation Consultant. Carol didn’t want to go as it was at Marie Therese House – a specialist unit for patients needing higher levels of care for illnesses like MS / MND / brain injury. The doctor was very nice and again discussed what lay ahead, he also outlined support that was available and we requested referrals to speech therapy, physiotherapy and an Occupational Therapist who could assess Carol’s equipment needs and look at the set-up of our house.

I suddenly turned into the organiser – don’t know how it happened but it just seemed to click in. I was concerned about getting a head start and began looking at the options and talking to the support team that would suddenly start to appear around us. It sounds cold but I’ve developed the ability to be quite clinical about what Carol needs and maintain that focus without bringing emotion into the decisions.

Emotion is always there, and there are some very dark moments, but you learn quickly that they serve you no purpose. Although crying and ranting have provided a much needed release at times unfortunately you always end up back where you started - nothing has changed when you come out of the other side except you’ve lost some more precious time and energy. Carol needs me to provide strength and support for all of her needs – as well as doing all I can to support the children. I need to focus on that and can’t do it if I’m spending my time as a gibbering wreck.  

This sounds even colder when I read it back but everybody needs to develop a coping mechanism that works for them. We all need to find support, and there are a few key people I’ve lent quite heavily on – yes the family are there to talk to but for me that’s too close. I find it easier to talk things out with a few close friends and I will forever be indebted to Tom and Jo, and Hils for always lending me an ear - and the odd shoulder. 

CAROL'S NURSE TRAINING

Carol started her nursing training in September 2006 with an Access course at Truro College. During this year Carol also joined the bank at Duchy Hospital and did a few shifts for experience. Carol sailed through the year and then had the anxious wait to see if she’d get a place on the Plymouth University course (at the Knowledge Spa in Truro).

Carol was obviously successful and started the course proper in September 2007. I said earlier that I’ve never seen Carol so happy, despite all the pressure of coursework, tests and placements. Carol was born to do this job and determined to pass everything in the process of qualifying.

The first year was a bit of a blur, but didn’t cause too many problems and Carol was also able to get work at Newquay Hospital for added experience along the way. Carol really loved working at Newquay and said that was where she wanted her first job to be when she qualified.

Carol became part of a tightknit group of friends working together to achieve on the course. They did everything as a group, studied at each others houses and it was good to see how they supported each other and celebrated successes together. It’s strange how those friends gradually stopped calling round after Carol was diagnosed and disappeared altogether the more ill Carol became – but I’ll say more about that subject in another post.  

I remember the second year being harder but Carol was still totally focussed and continued to pass everything. Unfortunately my memory of this year is heavily influenced by the development of the limp, Carol’s speech problem and her increasing reluctance to work at Newquay or go into College as the 2008/09 academic year end approached.
  
The diagnosis letter from the specialist (July 2009) states that he sees no reason for Carol not to carry on working whilst still fit!  Carol was so desperate to be a nurse and reality wasn’t being taken into account. Carol had stopped attending College and her placements, stopped taking shifts at Newquay and was already using a stick to walk at this point!

Over the Summer 2009 I think everyone was being kind and not wanting to state the obvious. Carol was due to start the third and final year but didn’t even want to go out of the house. Plymouth University insisted on sending Carol for an independent specialist examination – and we had to make a completely pointless trip to a hospital in Exeter in September. I say pointless because it was rather embarrassing for the doctor who met us – it was pretty obvious to anyone looking that Carol was struggling. I had to support Carol for balance at this point and I was starting to take on most of the talking as it was becoming more difficult for Carol to be understood. The doctor told us that it was not realistic to continue as Carol’s condition was progressing and working was not an option.

Carol knew this, and had known it for a while, but she was still devastated to have the door officially closed. To add insult to injury a few weeks later Carol received her certificate in the post for successfully completing 2 years of her diploma – it made her cry.        

CAROL'S MND

Motor Neurone Disease is a progressive disease that has a degenerative effect on the neurological paths. Basically it attacks motor neurones (upper and lower) and this stops messages from the brain getting through to the body – so you can no longer move your arms / legs / hands / feet etc. This lack of movement / loss of mobility leads to muscle wastage in limbs that are no longer being used. Similarly the impact on the throat leads to loss of speech, difficulty swallowing and breathing problems.

There is no cure.

So - at the age of 44 Carol’s just been diagnosed with an incurable disease – nobody says the word “terminal” because nobody discusses dates – MND doesn’t have dates like that you see, it’s you against the disease to see how long you’ve got. I suppose a lot depends on which type you are unlucky enough to develop and how healthy you were before the symptoms appeared. The age you’re diagnosed at doesn’t seem to make much of a difference from what I’ve seen / heard / read.  

I only ever looked at 2 sites for information – the NHS website and also the MNDA – Motor Neurone Disease Association – the MNDA would become invaluable in many ways in future times of need. These sites will tell you there are 4 main types of the disease and a sufferer can develop one or all of them to differing degrees –and they all have differing effects on the body and vastly different life expectancy periods.

Carol would develop the major symptoms of 2 of these types over the progression of the disease – these were already clearly visible at the point of diagnosis and the further development can only be viewed as rapid. Carol has been affected by:

Amyotrophic Lateral Sclerosis (ALS) – the most common form of MND. There is a weakness and wasting of limbs – this may start with the person noticing they are tripping when walking or dropping things. Average life expectancy 2 to 5 years from onset of symptoms.

Progressive Bulbar Palsy (PBP) – affects around a quarter of those diagnosed. Speech may become slurred and swallowing difficult. Average life expectancy 6 months to 3 years from onset of symptoms.

I’m sure there are elements of the other 2 types within Carol’s symptoms somewhere – PMA and PLS - but they will make little difference to the overall effect as on their own they tend to be more slow to develop and life expectancy can be much longer. Unfortunately Carol clearly developed the main type and things would begin to change in line with the symptoms of this.  

As I’ve said the main purpose of this blog is to record Carol’s journey and I plan to go through the progression on a timeline in the following blog posts. What you will see is that by November 2010, just 16 months post diagnosis, Carol would only retain movement in her left forefinger and thumb, as well as being able to turn her head slightly (with the support of a neck collar). Carol had also completely lost the ability to speak and there would be a steady deterioration in her swallowing that would ultimately lead to PEG feeding.

Up To Diagnosis - Brief Notes 2008/09

Looking back now I can’t even remember when the problem started. The first real thing I can recall was the infamous Meatloaf concert in May 2008 and a dash across the road where Carol looked really distressed. The limp was quite pronounced by then so it must have been there for a few months already and I don’t remember us being too worried about it. Although how worried Carol was I never really asked.

We got on with things and Carol was enjoying the course while I was doing my usual, and the children were being the children. August 2008 we went to Newbury for the weekend and I remember Carol struggling with the limp as we walked around. Again though we thought it was just a sprain or ligament problem that she wasn’t resting properly with working so hard herself. We drove straight up to the family to collect Bec from her annual Summer stay up there and then made our way back home without knowing what was coming.

My mum rang me that morning in September – Jake had died during the night. Living far from the family you’re always afraid of that phone call – the one that tells you bad news. But I’d always prepared myself for it to be mum or dad – that’s how it works after all – but Jake had only just turned 2 and seemed to be perfectly healthy. This was without doubt the most devastating thing I’ve ever experienced (up to that point I might add). Someone switched the light off in our family that day and it’s burned a little less brightly ever since. The next couple of weeks are a blur – grief is a very strange thing and everyone just looked vacant. I still don’t know how Carly (and David) got through – losing a child is not something I can comprehend, whatever the circumstances, and Jake’s loss was immense for the whole family.

We returned home and life just carried on as it seems to do but Carol was getting worse. Over the next few months she had every test imaginable and none of them came up with a diagnosis – and looking back that was the problem. With MND it’s a case of "we’ve exhausted every other possibility so this is all that’s left" – but we didn’t know that then. Carol now had a serious limp and the rapid muscle twitches were constantly visible in her arms and legs.

In March 2009 the latest batch of tests had turned up nothing and I can clearly remember Carol ringing me in tears at work. The receptionist at our doctors had quoted a note on her records that said “query MND” – Carol was still in tears when I got home. We went through all the denial stuff – “no it can’t be that it must be a mistake” – but it was suddenly out there – MND – big and bold as that. Our own doctor said he was sure it was a mistake but we had to go to see the neurologlist.

He did a range of tests and, looking back now, was pretty much ready to diagnose but Carol told him she was feeling better. He seemed surprised but said ok and sent us away until July. I do wonder if Carol knew then and was fighting off his words but away we went. Personally I was now worried that it was MND – I’d seen it before in a former work colleague so I knew what it did to him but I didn’t know how it developed. Carol refused to look it up on the internet but I looked into it and became more concerned that the symptoms did seem to match up. I was too terrified to say anything though so just hoped it was a mistake – that's our standard operating procedure isn't it!?

However the next issue convinced me we were in trouble, around May time Carol’s voice started to change. It was subtle at first but the speech became slurred and the voice croaky. Carol became so concerned she stopped going out, doing her course work from home and missing placement days.

Then suddenly it’s that fateful “Sliding Doors” day – July 8^th 2009 – as soon as we sat down the doctors face changed. Carol’s voice was the final clincher – they say you need 3 separate symptoms to make a firm diagnosis. He did the usual tests, but it was all just for show, then he sat down and ended the lives we’d made all those plans for. 

I remember being left alone in the room and holding each other while the tears came. Being the big brave man I then switched into “it’s going to be ok” mode - which I now know was the standard default position and the beginning of the denial stage. We got through a phone call with Margaret from the car park but I didn’t break down until I heard my mum’s voice on the next call. Dad wanted to come straight down and sort everything out but there was nothing that could change where we were.

Some Thoughts On Life Before

“Sliding Doors” is that film where she makes a decision on a certain day and ends up living a parallel life to the one she was supposed to.

July 8^th 2009 was that day for us – we sat in with that doctor and he said those 3 words “Motor Neurone Disease” – and everything stopped. It was as if the air got sucked out of the room and you could hear the blood pumping in your ears – and we looked at each other and realised that the life we’d planned wasn’t going to happen the way we’d planned it.

That’s the great thing about plans – they’re always in the future and you spend your life putting things in place to achieve them – and then today throws you a curve ball and all that hard work and those plans don’t mean jack.

How silly the rows and fallings out over the years now seem. We all just exist day to day without really thinking about anything other than “what’s for tea?” or “should I buy that?” or “I’m fed up with my job” or other wonderfully important stuff – football, Ex-Factor, Eastenders – what the hell’s it all really about!!

I think a lot about the silly little married couples arguments we had – sulking for days about stupid crap – and I wish I could take every one of those days back and do something more bloody useful with them. Because when a doctor tells you that you’re on the clock wasted time is one item on the long list of regrets that suddenly pop into your head.

Carol and me were supposed to grow old together doing the things we’d set in place with the early decisions we made in our life together. Our children arrived when we were in our early 20’s so that we’d still be young enough to go off and see the world with the money and health to do it! We used to joke about it and I’d always wind Carol up about the kids being gone at 18 so we’d be free! Others we knew were doing all the exotic holidays with the nice cars while we tightened our belts and lived in our council house keeping our debts low and living pretty well within our means. Plans you see, that’s what we’d made way back then, plans for the future.

We both wanted children and I suppose didn’t even contemplate waiting until we were in our 30’s or more, why would you want to do that? I wonder a lot these days what sort of dad I've been – Carol is an absolutely brilliant mum even though she was always a real stress head! I just got on with working, the standard male career path, while Carol did all the real work and raised our children to be the wonderful adults they are today. Carol put all of her hopes and dreams on hold to raise our family – and I let her do it – of course it’s easy now to look back like that. As an older and wiser man I see lots of things that just happened and Carol went along with all of them. Carol did the part-time cleaning and shop jobs, around the children while I supposedly earned the money to pay for the car, the house when we bought it, and holidays and all that. Without Carol none of it would have happened – and I’d have been a completely different person – one who wouldn’t be nearly as lucky as I have been to have spent 25 years with such an amazing lady.

Cornwall was a family decision – but I pushed for it and Carol went along – I don’t have any regrets about moving here and I don’t think Carol does either (apart from how often Annie would visit). The children have benefited from being here – of that I am sure – and that was really what drove the move. Being away from the family is hard but you have to stand on your own two feet and we’re all better people for that.

Even down here Carol covered the children – I got the managers jobs and earned the money while Carol tried to find the job she could really enjoy. If only we hadn’t worried so much about money then maybe Carol could have started nursing earlier – if only – there’s another phrase that’s been repeated again and again over the last few years.

We finally made that decision in 2006 and Carol at last got the chance to do what she’d been itching to do all those years. I’ve never seen Carol as happy in a job as she was during that 3 year period. Whether it was on placement, at Duchy or Newquay she was really doing the job she was always meant to do. The studying was hard but she never swayed and passed everything as she went through. We started making more of those plans – where shall we move to when you’ve qualified? Australia? USA?

We're Caught In A Trap - We Can't Break Out......

Hi - my name's Mike and I'm writing about my wonderful wife Carol - because I now need to.

Carol was diagnosed with Motor Neurone disease in July 2009.

I suppose I should have started writing this about 2 years ago - in fact I did start something, on the train back from a course in London early last year. It was called "Carol" and started to list all the things that had and were happening to us at that time. It's still on my computer - untouched since that day.

I've never blogged before - I don't facebook or twitter or any of those other things that everyone seems to do these days - I've never known what to say and I'm not sure I do now!

This is about writing down what's happened in our lives - specifically over the last 3 years - so that it's there for me to look back on in the future - I need to remember - although right now I wonder how I can ever forget any of it.

Somebody else may read this and see similarities to their own journey - or just follow the development of this dreadful disease in a person they don't actually know.
There may be someone out there who finds themselves where we were back in July 2009 or at anypoint we have been between then and now - reading about Carol's journey may help.

It's not meant to be seen as me writing a story, but I suppose it is the story of a life - a life that wasn't meant to be like this.....